leading-with-chronic-illness

Leading Others Along the Way

On Monday, I discussed how we inadvertently become leaders when we go public with our chronic illness diagnosis. We may not ask, nor want the responsibility, but it inevitably happens. Therefore, we face the questions: should I lead? Do I want to? and what example should I set?

Living with a chronic illness in the United States is becoming a more common occurrence. Because of this uptick, it is becoming more common to know someone affected with a chronic disease. Let’s reflect before your diagnosis for a moment: with your symptoms, did you go online and search for answers before visiting a doctor? If you knew someone with the disease in the results, did you approach them with questions?

So often, when I answer questions about my MS to those experiencing similar symptoms, do I hear how scared they are. There’s a desire for reassurance that they don’t have MS, or that it’s not a death sentence. People are seeking a connection with a person living with an illness that is not in search results. As someone who is out with my diagnosis, my role is to comfort and inform. 

I can, as can you, choose not to take on this role.  

We do not owe anyone answers about our illness. We can choose to refuse to answer, advocate, or inform about the disease. Yet, it is vital to be aware that when we go public with a chronic illness, we will continually field questions until others understand our stance on the matter.

If you choose to take on the role of “local” leader and “expert” on your disease, I wanted to write this post with you in mind. 

What are my Responsibilities?

If you’ve decided to be public with your illness and accepted a leadership role, there’s a set of unspoken responsibilities that come with it. I spoke briefly about this on Monday. I wasn’t aware of all of these responsibilities when I first started blogging about my MS.

As I went along in my journey, I saw good and bad examples of advocacy. As someone out with their disease, it’s imperative you set yourself apart from those who are out for the attention. You will find that there’s always someone out there who is a poor advocate for your illness. They post sensational images on social media, only focus on the negative aspects, and do not take the opportunity to inform others about the disease itself (just that they have it).

They might be considered inspiring by others, too, but look beyond the sensationalism and see the truth: they are attention-seeking and not informing. Be more responsible and educate others about your illness. The ones who are flashy and irresponsible make more work for the rest of us, so it’s important you help the cause rather than hinder it.

I want to share the responsibilities we undertake when we go public with our illness and become a token advocate for others. 

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cant-ask-for-help

But I Can’t Ask for Help

Have you found yourself in the position where you need help, want to ask for help, but found you are unable to ask? You may even say to yourself, “I want to ask for help, but I just can’t.”

Something stops you from asking. You may know why, and you may not. Often, I am too afraid to ask because I don’t want to take advantage. Other times, I inexplicably cannot bring myself to ask. There’s just a mental block that prevents me from turning to a friend or loved one and saying, “I need help.” They have to drag it out of me.

I am telling you if you are unable to ask for help, you are not alone.

Chronic Illness: The Ultimate Roadblock

Depending on your chronic illness, you may physically be incapable of asking for help. People with Multiple Sclerosis can sometimes have a lesion that affects a part of the brain responsible for managing your mood. One of the earliest symptoms of MS for Karine Mather was anxiety and depression.

Both of these mental health concerns are linked to MS, and both can cause a person to struggle to ask for help when they need it most

MS, and maybe your chronic illness, can create a situation where you logically know you need to ask for help, but you can’t bring yourself to do it. It’s scary when this happens. It’s also incredibly frustrating.

So how do you manage to ask for help when your illness creates the ultimate roadblock?

Finding a Workaround

Sometimes what stops us from requesting help is the physical act of asking. I feel so emotional when I use my voice because often, my voice and emotions will betray my level of need. While I am not required to “be strong,” for anyone, sometimes it opens up a more in-depth discussion. Most of the time, I am not prepared to have this conversation. I need help accomplishing a task, and I don’t want to examine all the emotional baggage I am feeling behind needing to accomplish the task.

So, the best workaround I’ve come up with to date is using technology.

While texting is evolving to include emotion (emojis, memes, and case changes), it is still a relatively emotionless medium. Take advantage of it. Texting or emailing someone allows you to remove all emotion from asking for help and will enable you to ask exactly how you want.

Consider reframing your requests, so it isn’t asking for help. Recently, I was tasked with developing volunteer roles. I needed to write up role requirements, and afraid of looking foolish, I wasn’t sure how to ask for help in starting the process. Rather than directly requesting support, I asked for an example role write-up so I could understand the parameters. It allowed me to ask for help without actually asking.

Reframing is an excellent tool because it allows you to get your request out in the open without compromising your beliefs.

Public Resources

If you are too afraid to ask people around you or have a limited support system, consider looking to public resources. Each “official” website related to a specific chronic illness has an extensive repository of information about the disease, how to manage it, and where to seek help. For example: the National MS Society has a huge section dedicated to resources and support.

You may also have government options available by way of social programs. But if you are like me, you may not be “bad” enough to receive any of these public benefits. Note: I am okay with that for myself. 

If you don’t qualify for a public program, there might be a private program available to get you the help you need. Plenty of people touched by your chronic illness donate to private organizations that can provide the resources you might need at the moment.

Additionally, these sites can have trained volunteers who can chat online or over the phone with any questions you might have. While they cannot answer specific medical questions, they can provide you with resources and a direction to head in with your research. If you get stuck on something, asking a faceless stranger over the internet can be more comfortable.

Look to your healthcare team. If the team isn’t able to, or unwilling to, ask for a referral to another professional. You want someone willing to answer your questions, no matter how illogical or random they may be. The advantage of modern technology is that you can speak to someone online. So if you are in a remote area, or have limited options for specialists, consider finding one online if your insurance will allow it. Note: this is not an endorsement of Live Health Online, I am linking them purely as an example.

Make it Gig

We live in the era of the gig economy, so if you can afford it, consider using it to your advantage. You have sites and apps that can bring you stylists, handypeople, groceries, and take you where you need to go. You don’t have to put friends and family out if you are willing to pay the fee. 

Unfortunately, this means it will add up, but it allows you to “ask” for help. For some of us, it is easier to pay someone than feel like putting a friend out.

Don’t Go it Alone

Having a chronic illness is isolating. Being afraid to ask for help when you need it can further isolate you, but you don’t have to be alone. There are plenty of people in a similar position to you. Look to online support groups to see how others handle their disease.

While chronic illness affects everyone differently, we can find similar symptoms and experiences out there. People who have gone through it found what works, and shared their findings online. It’s what I try to do. Just know that your mileage may vary. You have a better starting point rather than reinventing the wheel.

Find a healthy online space where people strive to uplift each other, rather than remain in a negative mindset regarding the disease. Venting has a place for your mental health, but wallowing does not. Post your story when you are comfortable. Read and engage with the responses given. Plenty of people want to help you, even if they’ve never met you.

If you can’t directly ask for help, find all the passive ways in which you can ask. There are so many opportunities available to you with the advent of technology. You don’t have to be alone in your illness, even if it tries to isolate you.


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Featured photo credit: Canva


declutter-your-mind-book-review

Book Review: Declutter Your Mind

After finishing Unf*ck Yourself, I did what many readers do and look for more books to read. I find that similar books help commit what I want to learn. One of the books that popped up was S.J. Scott & Barrie Davenport’s book Declutter Your Mind. I figured I would give it a go, considering July is all about mindfulness and loving ourselves. One thing often stands in the way of my own journey of love, and that’s the clutter that takes up space in my mind.

This book seemed like the perfect follow up to Bishop’s book since I still had some clutter holding me back. I wanted to get some new techniques, ideas, and perspectives to removing the clutter that prevents me from fully loving myself.


Note: I was not compensated to review this book, I am sharing my thoughts as it might help readers on their journeys. All links are unaffiliated and I receive no monetary benefit by providing them.


Book Information

Title: Declutter Your Mind: How to Stop Worrying, Relieve Anxiety, and Eliminate Negative Thinking 
Author: S.J. Scott & Barrie Davenport
Date Published: 2016
Publisher:  CreateSpace Independent Publishing Platform
Pages: 156
Genre: Non-Fiction, Self-Help

Goodreads Link
Amazon US Link


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Early Childhood Education Blogs

An important resource for teaching a toddler at home is the availability of blogs on the internet.

Twenty years ago it would be a trip to the bookstore to find a book among whatever the store had to offer. The publisher would vet a resource before printing to ensure the information was accurate and achieved a specific goal. Now we can search what we might need/want on our phone within seconds because anybody can put anything out there.

Therefore, finding a reputable resource can be difficult. Some blogs use tactics to shoot up to the top of the search results, which means that just because it’s on the front page of your favorite search engine doesn’t mean it is a good resource to use.

Not all of us go to school for early childhood education, so we aren’t familiar with the priorities in teaching a little one before they are ready to go to preschool. The researcher training I received means that I can’t just search for a specific milestone Jai should be hitting. I need to be sure whatever information I walk away with is credible.

I don’t want to be teaching him incorrectly or placing an expectation on him before he’s cognitively ready because the blog has their months wrong.

What you’ll find below are some tips for vetting your own research to determine if a blog is worth following or if they are spreading misinformation. Granted, this is less of a concern when it comes to early childhood information, but operating under that belief that a child should learning something before they are ready can make the task of preparing them for school frustrating.

How to Vet a Blog

There are several simple steps that I follow to determine if a blog or article is credible, especially if it’s on a topic I am unfamiliar with, like childhood education. Many of these suggestions seem like common sense, but even I’ve been guilty of skipping a step or two only to find a resource isn’t credible later.

Pre-Research Steps

  • Go to the experts first. Determine what are your national standards for a particular age and their recommendations. I find these sites can be a bit stuffy for their ideas which is why I branch out into the wilds of the internet.
  • Decide what you are looking for: activities or material for teaching.
    • Activities do not need as much vetting. Before you start the project, you can determine if it will be age appropriate or doable.
    • Material for teaching is where it gets dodgy. If your child is interested in space you may find that you stumble upon a set of blogs that advocate for alternative theories on planet shapes. Even the ones that advocate mainstream ideas may have incorrect facts that you inadvertently teach your little ones.

Vetting a non-scholarly/non-expert blog

  1. Do a search for the activity or material you want to do with your little one. Read the blurbs underneath the site header on the search page to determine what the site will offer.
  2. Once you click on the site, make the following observations. These are all meant to help you determine the resource’s motivation for getting you to visit their page:
    1. What is at the end of the domain address? is it a “.com,” “.edu,” or something else? My blog is a “.blog” for reference. This will determine the type of site you are visiting. Anything that isn’t .edu/.gov/.org (though .org can be problematic at times) means that the site is commercially run. It doesn’t mean they aren’t an expert, just that they may have other motives to draw you to their site.
    2. What do you see when you first visit the site? Are you met with pop-ups to join a newsletter? A  bunch of ads (if you don’t use ad block)? Cluttered layout? None of these are bad on their own, because all of these are used as a means to earn the blogger money, but it helps you determine their monetary motivation.
    3. Is the resource sponsored? Many bloggers who want to remain reputable will disclose that the post is sponsored by someone else. If the post is sponsored, is it a company you are familiar with? If it isn’t, again, not a bad thing, but you may want to do a more thorough check to determine if the product is worth getting or if you want to go with an analog. If the blogger does not disclose sponsorship, but it is clear that’s what is happening, then consider finding another resource.
    4. Check to see if there is a clear bias on the page: this can be a belief system, lifestyle, or product recommendation. Again, none of these are bad, but it might affect the material or activity you want for your little one. It is just something to be aware of as you set it up/do your research.
  3. Check the length of the post. Quantity doesn’t mean quality, but I do find there is a healthy balance in some of my favorite resources. If a post has too many pictures before getting to a very short blurb on the activity, I am less likely to stay and use that specific resource because it will be annoying to have to keep scrolling down if my page accidentally refreshes (a problem on my phone). Likewise, if the post is too short, and I need more information, I’d rather go elsewhere because it is unlikely they actually know what they are talking about.
  4. Does the information match up with the pre-research you did on the actual expert blogs? If not, but looks like something you could use later, it would be worth bookmarking until then. But be mindful about all the other information posted on the blog.
  5. See if they link out to other resources within the post, especially if you are looking for teaching information. I try to link out to other blogs/resources as much as I can, especially if I am writing a more informative post because that helps demonstrate my ethos and commitment to quality blogging. This isn’t super important to your vetting process, but it may mean that they are a blog worth following for future ideas.

It may seem like a lot of steps to go through in order to determine a blogs relevancy, but it’s worth it because it can help weed out the bad information or activities out there. Many blogs you stumble upon on the first page of a search are there because they deserve to be, but sometimes you manage to get a less reputable one in the mix.

Below are my current recommendations for some favorite childhood education blogs.

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